I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Thursday, April 11, 2013

Catching up

So, we were blessed with clean scans on both kids on Tuesday. The lesion in Lauren's brain continues to improve. Brent had an unremarkable chest CT. These are the most delicious bits of words that I can imagine stringing together...and I take great joy in doing it. I keep saying it over and over in my head: "We are good here, we are so blessed!"

We celebrated, and let out our collective breath, one that we did not necessarily know we were holding.

I worry before scans. Some preoccupation is unavoidable and just part of the deal, as the verdict approaches. Some things on my 'to do' list (which, for the record, is always very, very long) really do not make sense to do until we have scan results, like rearranging some appointments in NYC, for example. Currently, we have an appointment in May with Dr. Healey and one in July with Dr. Cordeiro. Given the travel considerations, (it is 450 miles) it would make immense sense to combine them, and go once, in June,...unless of course if we have an oncological issue, and would need to go sooner. I had to put that task off, until we could see where we stood.

Elective things are caught up in this tangled mess as well. Do I sign up Lauren and Alex for summer swim team? Do I commit myself to a sand volleyball league? I have forms to fill out for oncology camp for Brent and Lauren. Olivia should do safety town this summer... Hmmm...better wait on these a bit as well.

So, such things are put on hold.

What I have discovered though, is that I am not always so discriminating these days. I put off doing many things prior to scans, for no discernible reason. I suspect that it is a general feeling of being stuck or paralyzed that carries over. Because regardless of the medical results, we are going to need clean underwear...so why have I failed to do the laundry in a week? Paying the water bill is not contingent on clean scans, yet there it sits, patiently waiting.

At the hospital on scan day, I can not focus on anything more mentally taxing than "Words With Friends," during the moments when I am just waiting. The kids bring books with them and plow through them. I end up reading the same page over and over, and give up. It is a criminal waste of time, when the backlog of books that I want to read is so long, but the vague fog in my head allows for nothing better.

I have been laughing at myself all day for this, as I scurry around, try to catch up and get it together. Chastising, because to catch up on laundry alone is brutal. And I have done this to myself. Silly girl!

But, while I put away groceries, lump some laundry, and find my checkbook, diving into the pile of papers I have simply tossed on my desk since before the kids and I went to DC, I hum a little tune in my head. And I repeat over and over, "We are good here, we are so blessed!"

Because we absolutely are.

I will try to do better next time, because for us, there will always be scans, every 3 months. So, it is worth the effort to better manage it. And maybe if my water bill is paid in July when we do this again, I can focus on a good book.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.